It always throws me...

[Ihurt]

I hate this disease.(Im sure Im not alone). I was fine all day, despite waking too early this morning. Now, pain all on the left side, right from the neck to the toe. Of course, the temp outside is cold, and as is the usual for these Pocono Mountains,the sun is shinning and it's snowing! Pennsylvanians call this a squawl, I call it painful lol. The minute there is any moisture in the air mixed with the cold, the pain starts in. Start to feel like I have the flu. Is this how it starts for others and out of the clear blue? Somedays I think Im losing my mind. Most days the disease never ceases to amaze me. Hits when you least expect it to.

Just need a little reality check I guess lol

Elaine

[PJ66]

Elaine,
I can totally relate. I can be fine and out of the blue BAM! I feel like crap. Some days i wake up hurting, other days I wake feeling good and stay that way all day, then other times I can wake up feeling good and then out of no where I feel so ill. I also hate it!!!!!!!
Polly

[Ihurt]

Thanks Polly-sometimes I just need to see that there are others out there like me and Im notso different and it's not all in my head. I don't know if you had the squawl that came through here earlier, but the barometric pressure was dropping and it felt like someone was putting a vice grip on my head and neck. I hate that feeling. I ended up taking a pain med it was so bad. So needless to say, Im back in the reclyner, cooking is up to the 20 yr olds tonight, and I hope this passes soon!

Elaine

[RichJ]

hi elaine and polly, :D
that sounds like me to a T. every moring when i get up. i wonder what i will feel like all day. it's so nice not to feel alone with this stuff. i just wish we didn't have it

try and have a good night all

richard

[bratsareus]

Elaine I am the same way and I live in Texas. If it gets damp and cold , it really hits me. The most you can do is try to stay as warm as you can.

Patty

[mb2]

Is that why I've been so exhausted yesterday and today! I live outside DC and it got really cold and windy yesterday with high winds. I could only curl up in a chair and rest and doze. NO energy.
Today I did some things, but I'm still really tired and the weather is abnormally cold--some front is coming through.
Thanks for pointing out how the weather can make you feel so bad.
Just did my Enbrel shot, will go to bed now and hope that I have some energy in the morning.
Hang in there, everyone!

Mary

[einna]

I've been over doing it lately and know that I've pushed my PA body to its limit. All weekend I felt like crap and this morning for no reason I don't hurt quite so badly. This disease is sneaky and rotten. There's no figuring it out. You just have to roll with it and take care of yourself.

Annie

[PJ66]

Elaine,
No, we didn't get any of those squawls today. But it sure was cold. I was fine in the morning and afternoon. This evening it struck me like a ton of bricks.
Polly

[jojocat]

I feel really guilty when I call off work, but I know my body and when it says sleep I sleep. If I don't the price ratchets up a couple notches and I miss two days later.

Thankfully my boss is understanding. I worry every time though, that the understanding will wear out.

We are in this together friends. One decision at a time.

[Ihurt]

THE CENSUS IS IN....it's the wind! I think without these high winds we'd be ok.

Jo, don't feel badly. I used to feel that way too, but then again I worked for a mad man who did not understand, and he was a doctor!

Patty I wish I was in Texas lol-My MIL lives in Sugarland-nice and warm lol

Annie: I AGREE-this disease is sneaky and rotten.

Mary: Hope the Enbrel works-I was on it for months and it did not work for me.

This is the third day home for me. Woke up a while ago but don't feel as badly as I did (thank God). We will see how the rest of the day goes (fingers crossed) Bad weather is on the way. Yesterday was the worst. It was a 2 vicodin day (very very rare for me). The pain was unbearable. Iv'e decided that this is a flare...it started at about 1:30 Monday afternoon. I asked my doc why it comes on like it does and he said there's some research that talks about "sudden cytokine releases" and that's what they attribute to the "flu like feeling". Whatever it is they should just call it the "takedown" because that's what it does to us.

But no freinds, we are not crazy........we are creative, because we have to live our lives by the weather channel and other factors!

Elaine

[Ihurt]

Have you felt any better since the other night then? I know you are about three to four hundred feet below me in this mountain elevation so I don't know if it as bad there. I notice that when I travelback to Jersey I don't hurt as bad. I think the higher in the elevation the worse the pain gets....Unless I am really losing my mind lol.

Elaine

[PJ66]

Elaine,
I have felt pretty good today. It just comes and goes. Lately I feel pretty good all day then around 5-7pm I start to hurt and get that flu-like feeling. Then the other night I had a anxiety attack. My 6 year old caused that. I felt ill the rest of that night. I don't get them very often.
Polly

[Ihurt]

I have three-luckily the 25 yr old lives in Jersey with his girlfriend, and he's the co creator of the new game boy advance games. He was a handful growing up though-severe ADHD.

Now I have the 21 yr old who moved back home with his girlfriend Alicia-her I love, him I need prozac for lol.

The thirteen year old is the one who gives me the panic attack. She just doesn't stop! I wish we could get into te fast lane of these teen years and just get through them! Im lucky though, the older ones will take care of Megan when Im not well, and they will do dinner if I can't. They also help shop and keep up with the house.

Feel better and don;t let the 6 yr old get to ya....remember all the year you have left with him/her!

Elaine

[PJ66]

Elaine,
My 13 year old doesn't usually bother me to much. i try not to let my 6 year old get to me but sometimes she can just drive me crazy. She is so cute and sweet but she really tries my patience, especially when I'm hurting.
Polly

[crazyme]

Hi, girls

I hear 'ya. I have 2 beautiful boys under the age of 3. My little darlings don't seem to care that I am having pain. I feel so bad because the little one (Cole is 9 months old) wants me to pick him up, etc. And my 2 1/2 yr od, Jack, is so demanding; especially in the morning. This morning was one of my 'bad' days and I could hear them in their rooms wanting me to get them out of their beds. My body just didn't want to move, I was exhausted, and my fingers were really swollen. I just wanted to pull the covers up over my head. I feel so guilty when they want to play and I am grumpy because I simply don't feel well. New to NSAIDs, my stomach has been really touchy this week so that hasn't been a joy either.

I keep wondering why this had to hit me now. I am 38 yrs old and was having enough problems keeping up with my angels as it is. LOL

Luckily, my hubby has been doing extra to help me out.

I am scheduling an appt with a Rheumy to see if PA is the culprit.

Good night!

[GMOM]

Hi, folks. I just came across this thread, and am amazed at how well it describes my life. I will be going through my day, feeling ok, and then boom. My husband can even look at me and say "You just lost it, didn't you?" It's like the bottom drops out. Then all I can do is lie down. My mind takes off, and I have no mental or physical energy. But if this is common to this blasted PA, why don't any of my docs recognize it? Rheumy says see family doc. Family doc says my blood sugar is fine, heart is fine, no problem. I blame the meds or ask if I am honestly either crazy or actually hypocondriac. Can this really just be the PA?
Elaine, the tight contractions of your neck and head, with barometric change, is typical of migraine. I have learned that many of us who have PA also fight these nasty headaches. I'm so sorry you have these. They add another entire deminsion to this plague!
God bless all, and thanks for all the help and information you put out here. I'd be lost without it.
GMOM

[bratsareus]

Hi, folks. I just came across this thread, and am amazed at how well it describes my life. I will be going through my day, feeling ok, and then boom. My husband can even look at me and say "You just lost it, didn't you?" It's like the bottom drops out. Then all I can do is lie down. My mind takes off, and I have no mental or physical energy. But if this is common to this blasted PA, why don't any of my docs recognize it? Rheumy says see family doc. Family doc says my blood sugar is fine, heart is fine, no problem. I blame the meds or ask if I am honestly either crazy or actually hypocondriac. Can this really just be the PA?
Elaine, the tight contractions of your neck and head, with barometric change, is typical of migraine. I have learned that many of us who have PA also fight these nasty headaches. I'm so sorry you have these. They add another entire deminsion to this plague!
God bless all, and thanks for all the help and information you put out here. I'd be lost without it.
GMOM
You are not going crazy and you are not alone. I get the same way and my dh knows when it hits me too. Nothing to do but go with the flow.
Patty

[mb2]

Yep, I recognize it too. I'm so glad to find out what's going on with me. I feel like I'm on a roller coaster. One day, no energy at all. I just can't get going. I keep trying to do things, but find myself sitting down and just staring. On other days I just can't get started on anything at all--no mental or physical energy.

I used to be a very high energy person who had trouble sitting still and ran up and downstairs. Now I avoid stairs. There are so many things I'd like to do and I can't or I figure I'm about due to be exhausted.

The mtx seems to hit me about 36 hours after I take it. I usually take it on Wed evening before bed and I'm OK on Thursday and wiped out on Friday. I hope to recover in time to do something enjoyable on the wkend.

I can't imagine feeling like this having to deal with small kids. It's hard enough to have the energy to deal with kids without this horrible fatigue. We have grandchildren and they do tire you out, but you can send them home!

Mary

[GMOM]

Mary, I know what you mean about grandchildren. I push myself past my limits to be able to do things with them. Looking back from here (61 years) I realize I did deal with this while my kids were little. But, since the pain moved around so much and fatigue was so general, the docs always wanted to treat depression. Can't tell you how many times I tried to tell them...first I was fatigued, then depressed because it was so hard to be what I thought I had to be! No one ever heard me. It took a curled up hand and bad ana results at age 60 to get a diagnosis. I hope young men and women can be diagnosed earlier now!
I am in a major pain flare right now and the fatigue is worse than it has been in months. Does anyone know if fatigue and pain both flare together? Still trying to work out the issue of pain without mobic vs ulcers with mobic! MTX must not be working, and I may be headed to the bigger guns.
Bless you all. Have a peaceful night!
Gmom

[PJ66]

GMOM,
I think it is. When I'm in a lot of pain that seems to be when I get fatigued. I feel like dealing with the pain just wears you out. That has always been my theory on it. Don't know if it right but sounds good to me.
polly

[patti2957]

I have fatigue and that flu-like feeling more often than I have severe pain.... my rheum said that having an illness is tiring, and that being in pain all the time is tiring, but I'm not in that much pain, it's not unbearable. Stiffness and soreness, yes. Fatigue and feeling like the bottom is going to drop out if I don't lie down are what I call the "brick wall," or the sudden discovery of limitations.
Does anyone have more fatigue/flu than pain?

[mb2]

Patti: I'd say that I have more fatigue than pain, but then it can be easier sometimes to just ignore the pain and keep truckin', but you can only ignore the fatigue so far until it nails you to the sofa. I have lots of stiffness and soreness, swollen joints, sometimes sharp pain when I accidentally try to move a sausage digit beyond where it can go for example.
GMOM: Yes, the little ones can be exhausting and we certainly push ourselves hard to enjoy them. Then I might need to take a break to rest up!
I also take Mobic for pain and I take Protonix, I think partly so I can take the Mobic. When I try to cut back on Mobic, I do have pain as well as greatly increased stiffness and soreness. I used to take Mobic intermittently, now I take it about every day, and yes, Patti, that's probably why I have more fatigue than pain. Protonix is used for acid reflux problems and saves your esophagus and stomach from the painkillers. Of course, I'd rather not take any of this stuff, but.... GMOM I also am on mtx and Enbrel. Adding the mtx has helped quite a bit, but I think the PA is getting into my wrists, forearms and elbows. Something is, anyway. I also have OA and FMS! I'm 59 and was dx'd last May.
I say do as much as you can to fight it, even if it means taking these meds. I want to maintain as much mobility as I can and I'll go down fighting this horrible disease!!
Mary

[Heron]

I get this horrible feeling of being really cold inside. The cold works from the inside out. I don't know what causes it. Hot baths help.

[GMOM]

Heron, I get those chills also. What meds are you on? Chills are the worst after I take my mtx. Not sure it the cause is the mtx or if it is just the chills associated with extreme fatigue. Either way, the only solution for me is hot bath, heating pad (and my warm-blooded spouse).
God bless.
GMom

[patti2957]

I hate to say this but right now I'd welcome being cold - I have been sweating all day. Not hot flashes; I hurried around this morning getting ready for church, used the blow dryer, it's like my internal temp shot up and won't go back down. Took mtx today so I don't know if that's the cause. It's very rainy, rainy, rainy and the barometric pressure is doing the cha-ha - 65 today and 35 tomorrow... and it's working on my joints!
Anway, just whining... anyone else hot? feeling crappy because of the weather? whaaaa.
patti

[RichJ]

I get this horrible feeling of being really cold inside. The cold works from the inside out. I don't know what causes it. Hot baths help.
hi heron,
i get the same thing and don't know what makes it. it can be 114 around my machines at work and i get gosse bumps for no reason. i wish i knew what makes this happen.

have a good warm night all

richard

[Heron]

I am taking Voltaren. I quit MTX after it made me so sick.

[Ihurt]

There's some reserch that says if you have been a victim of abuse or trauma this could account for it because the study they did focused on people from two backgrounds, and they found that they had "shrunken hypathalmus: of the brain.

Hypathalmus is responsible for regulating temperature. Some of us have had this disease triggered by the abuse or trauma and or serious infection.
The two groups they studied were Vietnam vets and abused adults (abuse happened in childhood). The MRI's studies of both showed the same significant results of the hypathalmus-it shrunk.

I know in my own case my body has a terrible time regulating temperature. Two summers ago I got overheated on a 90 degree day despite the fact that I kept myself hydrated and cooled with water on the outsidie of me. I will never forget almost not being able to make it home (I had two kids with me). I laid my head on the steering wheel at every light-I really wanted to drive to the nearest ER-truly I did. I went home got into bed, vomited, shook like I had the DT's! I have the same extreme in cold weather, it just simply is that my body cannot regulate temperature. Even when Im getting into a swimming pool in the summer. It takes me a great deal of time to get in. This is why my husband insisted on getting the heater this year for the pool. When everyone else feels like the water is fine, Im trembling and turning blue.

Im resigned to think of it in terms of a brain dysfunction for me. The hypothalmus is responsible for a lot of things including but more importantly temerature,and mine just doesn't work. It's like a bad thermometer onlI can't replace it.

Elaine

[MikeK]

I've always had a problem with temperatures. Too hot or too cold really does a number on me. (Although I can handle hot better then cold.) I get nauseous if I don't wear gloves (or at a minimum use paper towels) when I separate frozen meat or if I holding a drink that's too cold. I can't help but think that the problem is indirectly related to psoriasis.

Just my $0.02.

Mike